Grieving parents ‘betrayed’ as Britain’s biggest mental health inquiry begins

Dozens of families who have lost loved ones while in the care of the UK's health service say they feel “let down and betrayed” on the eve of the largest inquiry into mental health services in UK history.

An inquest into the deaths of up to 2,000 people who were treated in mental health facilities in Essex between 2000 and 2023 or who died within three months of being discharged will begin on Monday.

However, some parents reacted angrily when they were told that their children's deaths would not be part of the investigation – even though they were in care during the period in question.

Kobad Bankwala, 68, and his wife Heidi struggled for years to help their son Darian, who suffered from multiple conditions including autism spectrum disorder, depressive disorder with psychotic symptoms and learning disability. He was an inpatient in the care of Essex Partnership University NHS Foundation Trust (EPUT) from February to June 2020 and was admitted under the Mental Health Act.

Later, Darian was granted informal patient status, meaning he was to be cared for under general observation and with indefinite leave, despite having expressed suicidal intentions.

He was discharged from the Linden Centre in Chelmsford on 7 July 2020 against his parents' wishes. Darian was assessed at home by NHS staff on 9 October and 13 November of the same year, but despite his parents' concerns about their son's “very worrying behaviour”, he was not readmitted to hospital. Darian, the youngest of five brothers, took his own life on 27 December 2020 at the age of 22.

His parents, Kobad and Heidi, applied for principal participant status – meaning they would have rights including the right to propose questions through the council – but the inquiry's chair, Baroness Lampard, refused.

Mr Bankwala said I: “I told the Baroness that she needed to meet me to discuss my son's complex case, but we were ignored. She is a lawyer and knows how to navigate the system: she was involved in the Jimmy Savile inquiry. We feel that she blindsided us because she only told us everything at the last minute and she, like others, simply did not have the time to respond appropriately before the inquiry begins.”

Darian received a home visit from a consultant psychiatrist on September 18, 2020, who decided he did not meet the criteria for inpatient care. The inquest heard that although Darian had previously been inpatient, he had been discharged five months before his death, meaning his death was “outside the scope” of the inquest.

The inquest into his death concluded that Darian's discharge “should have been handled more professionally”, among numerous other failings. The court heard that a senior doctor had advised him to self-medicate at home, with “little or no professional guidance” on what that treatment would entail.

Mr Bankwala said: “We tried all along to get Darian admitted but they just wanted to get rid of him, completely. I have an apology letter from the hospital saying his discharge from hospital was 'unsafe' and his care in the community was 'substandard'. We were devastated when we were told we were not eligible for core participant status, we were angry and upset.”

“Why are we judged by our need when it comes to litigation funding?”

Bereaved parents at the centre of the Lampard inquiry have criticised the fact that they are being asked about their financial situation before making their impact statements.

Under the terms of the Inquiries Act 2005, Inquiry Chairs are required to ascertain the assets and monthly disposable income of core participants before deciding whether to award them a payment for their legal representation in the public interest. Core participants in the inquiry were asked whether they had a disposable income of less than £3,200 per month and assets of more than £60,000.

Julia Caro, whose son Chris Nota died in 2020 at the age of 19 while in the care of the Essex Partnership University NHS Foundation Trust, said I: “Some people say they've never been asked that, but it's strange. They shoot you and then want you to pay for the bullet. What if we had or didn't have the minimum assets to pay for legal aid, but then didn't or couldn't? Would there be an investigation where one side didn't have lawyers? That's just nonsense.

“Our lawyers were funded as long as possible to keep them on the defensive. Impossible deadlines were set for witness testimony. It didn't have to be that way.”

Melanie Leahy has been fighting for a public inquiry into the death of her 20-year-old son Matthew at the Linden Centre in 2012 for over a decade.

She said: “Why are we being means tested? Who made this a policy and why are we being punished for it? Communication has been lacking. We have been asked by the commission of inquiry through our lawyers who we are bringing, but we don't even know what day of the week or what time we are coming. So how can we do this if we don't know when we will be called?”

“Some people have relatives at home who they need to care for, others work and need to take time off. We all already have a clear distrust of the way things are being handled before they have even started.”

Priya Singh, a partner at Hodge Jones & Allen who represents more than 120 victims and families, said: “Our families are being asked about their income and savings to see if they are eligible for the government to cover their legal costs. The families are stunned that they have to provide this information. Why do they think the minister has not waived a means test? Has the chair suggested to the minister that he should waived a means test? If not, why not?”

“Why are families being put in the extremely stressful situation of being told that if they do not meet the relevant criteria, they may have to bear the legal costs of an investigation into the state's failings that led to the death of their loved ones?”

A spokeswoman for the inquiry said the cost of legal representation was a matter for the Government. However, health officials said that while ministers set the parameters for the level of legal costs awarded at statutory inquiries, individual decisions on legal costs for key participants were made by the inquiry chair, independently of the Government.

The inquiry will sit for three days from Monday and hear opening statements from the chairman, lawyers representing the families and Essex Partnership University NHS Foundation Trust. Between 16 and 25 September it will hear statements from families and friends of deceased patients about the impact on their lives, or statements from former patients about the impact on their lives.

The Lampard inquiry is expected to make recommendations to improve mental health care in the NHS across the country.

Health and Social Care Minister Wes Streeting said I: “My thoughts are with all those affected, including the families and loved ones of those who have tragically lost their lives. This is incredibly sad, with so much loss and suffering. In this context, I will be meeting the families shortly to hear directly about their experiences and to reassure them that we take this issue extremely seriously.

“We remain committed to supporting the inquiry and will work with partners to transform mental health care as we repair our broken NHS.”

The first mental health inquiry – the Essex Mental Health Independent Inquiry – was launched in January 2021 under the chairmanship of Dr Geraldine Strathdee, who called for the additional powers after only 11 out of 14,000 staff agreed to give evidence.

In June 2023, Health Secretary Steve Barclay agreed to give the inquiry statutory powers, meaning witnesses were legally required to give evidence. Baroness Lampard was announced as the new chair of the converted inquiry last September.

A lawyer representing the victims' families described the Lampard inquiry as “as important as the Post Office and Covid investigations” but criticised the way it had treated the bereaved, who had fought for years to get to this point.

Priya Singh, a partner at Hodge Jones & Allen, who represents 126 affected families, 56 of whom have been granted core participant status, said I: “The families who were denied core participant status have also fought with all their might to ensure the success of this investigation. They feel abandoned and betrayed.

“Without their tireless efforts, there simply would not have been an investigation, an investigation that is of paramount importance to saving future lives and establishing how one care service could have recorded over 2,000 unexplained deaths. In some cases, we see no legal reason why they were not granted this core participant status.

“We call on the Commission of Inquiry to reconsider its decision. Every death, every abuse and every injury is important and should be part of this investigation so that the right recommendations can be implemented to end the systemic failures.”

A spokeswoman for the inquiry said: “The Lampard Inquiry encourages anyone who is personally affected by the issues being investigated to take part. Decisions on the status of core participants (CP) are ongoing. There are currently 75 designated CPs but this number is likely to change as decisions are made on an ongoing basis.

“It is not necessary to be a CP to participate meaningfully in the inquiry. Personal accounts and experiences of people who are not CPs are no less valuable in the eyes of the inquiry than those of people who are CPs. Being a key participant does not mean that one person's evidence is more important or given more weight. The inquiry places value on listening to a range of diverse experiences.”